Immune/Natural Killer Cell treatment for those ttc or pregnant. (AKA the 19th pred thread!)

[Seekingmiracles]

The new thread for anyone ttc or pregnant with immune issues or natural killer issues. Welcome ladies!

Sorry pj12, I didn't answer the bit of your question that i could I'll be honest, I just googled recurrent miscarriage/chemical pregnancy and chose Mr S because of location and what I'd managed to glean from forums about his success. I don't recall seeing much about Coventry but I probably filtered it out due to travel distance. I'm a bit older than you, just turned 39. I went private as I haven't had enough (how horrid does that sound) miscarriages for the nhs to refer me but I knew in my gut that it wasn't just a case of being unlucky or age.

Sorry for your losses pj . I know Coventry tests for uterine nk cells where as DrS tests blood and puts them into a pregnant like state - he then tests various drugs on them to see which works best. Prednisolone (steroid) is used by both. Coventry also use progesterone supplement.
DrS' protocols vary depending on your nk activity/ numbers and any other medical issues but generally it's prednisolone from ovulation. Test at 10dpo then either continue until 14 ish weeks on pred. Progesterone is often thrown in as well as intralipids (how many of these you have will depend on how high/active your levels are - the worse they are the more you'll have)
I also went straight in with DrS and didn't really consider Coventry - he's closer for me and has a bloody brilliancy track record. That was enough for me. I hope what ever route you chose you get an answer but it isn't uncommon to have a healthy pregnancy followed by issues - you're not alone.

Karry - so glad your scan went well and DrS is happy with your progress. Are you 7 weeks now?

Hello seeking yes, 7 weeks x

One question I forgot to ask Mr S but would welcome opinions...I haven't told my gp I'm pregnant yet - at what point did others do this? I figured that as I'm paying privately for scans for the time being there might not be any point? Or should I do so so that I can enter the system as it were for later?

Thank you very much Seeking. I've done a bit more research today and I think I will also go with Dr S as his track record seems brilliant and everyone online praises him. Can anyone advise how much the initial blood tests cost? I know everyone is different depending on your history but I don't have any health issues (that I'm aware of) so I'm assuming it will be a standard batch of tests you start off with? My insurance will cover the consultation and the follow up appointment but I have to pay for the tests myself (I haven't had any tests done bar the Day 3 and 21 tests which came back fine).
Karry a - such wonderful news about the heartbeat. And it's so comforting knowing you are being looked after and having regular scans. I find the anxiety in the first 12 weeks unbearable, it is so helpful to have regular scans in those early days. Very best of luck to you.

so happy for you karryk!!! I didn't tell gp until 16 weeks, had the 12 week scan etc with dr S.

Karry - I went to my surgery and had my booking in appointment at 10 weeks, and had my nuchal scan through the NHS. Didn't see the point in spending extra money doing that with DrS. My midwife has been pretty good so far. I then saw DrS for my last appointment at 15 weeks and took my scan report along with me.

Pj - I'd had a lot of the tests done on NHS and my bills for tests and initial consultation came in around £1500. I think if you need all the tests it's more likely to be nearer £2k. He does get very busy so I'd get on the phone today and at least book the consultation.

Thanks :) x I'll see how the next couple of scans go and take it from there.

Pj - I had my tests done earlier this year and it was around £2100 (gulp!)

X

Ouch! I was thinking around £1000 - 1500 max. I guess I was about a £1000 off . Well I have my appointment booked for end of Aug. I just want to get things moving. At least now I know someone will be really looking into my situation as opposed to being told that it was just bad luck .

Congrats Karry! So glad to hear you've had a good scan!!

PJ- I'm sorry to hear about your losses. I too had no issue getting pregnant the first three times (all ended by 6 weeks), then miscarried a 4th time with Dr. S. Made some adjustments, had a a very tough 5-6 months TTC this one... But now I'm over 36 weeks along with a little boy! I do suggest you ask Dr S office for the tests you can do through your GP to try and cut costs though.

Going in for a scan today to check growth as my fundal height has lagged a bit. Really hoping baby is still measuring healthily and getting nervous. He's a good little mover though so cheers me up... !

Update: Baby is measuring nice and big now :) Phew! Now to drown out all the doubts and immerse myself in earth-mamma-rose-tinted-glasses-positivity

Congrats drttc can't believe you're over 36 now!! Brilliant!! Xx

Thanks Billy! I know it's so surreal. The midwife told me to cross my legs til Sunday and after that they're happy to see me- so weird to think I'm actually allowed to have this baby now!

Hope things are going smoothly for you with the medication and cycle planning... To think how far ladies on this thread have come since being so low a year ago makes me smile :) You're next!!!

Wow Drttc, your SO close now!! Glad little man is actually measuring well despite your small bump I'm sure the next few weeks will go pretty quickly!!
I can't wait hit 30 weeks... Feel like that will be another massive step closer and then it will hopefully fly by!

Thanks Seeking! The funny thing is visually I don't think anyone would say my bump is small haha! Crowds part when this thing walks through...

Being in the 30's definitely makes you feel proper third trimester! Are you about 26 weeks now? How's bump?

I finished my NCT course at the weekend and one of the ladies quietly mentioned infront of DH that she'd had 3 recurrent miscarriages (I wasn't in the room). Part of me wondered if she'd gone the immune/natural killer treatment route and if she'd even come across this thread. Would have been nice to be open in person about RMC with someone who understood!

Oh wow drttc and seeking you're both so close now!

Hi pj12, do you have a supportive GP? Definitely see if you can get tests done through the NHS and just take results to dr S. If you have a decent epu you could also try getting regular scans through them as well which will help save some more. I did everything through Dr S until 16 weeks (I felt very let down by the NHS and just couldn't face begging for things) and it cost me about £5000 in total I think.

drttc I know what you mean. I felt very isolated from 'normal' pregnant women because I just didn't have that naivety

Thanks detached :) chuffed to hear baby is measuring well!

I know what you mean Snoopy, I can't face trying to persuade my gp etc to be involved. This is the gp who refused to prescribe thyroid meds despite saying she agreed I needed to be treated in order to have a good chance at a healthy pregnancy (!!) I also tried to chat with 'normal' expectant mothers but had to stop as I just wasn't as full of joy...not that I'm a cloud of doom but I suppose our experiences make us more cautious and conscious of what could happen....

The costs are definitely racking up...I've had to raid my savings to pay for carpet in the new house but it'll all be worth it, fingers crossed.

Pj - i don't know if you're anywhere within reach of the epu at university college London, but I found them to be really helpful in the past once pregnant in terms of getting a scan.

Going for my second intralipid on Monday - hoping it can go in my arm instead of my hand this time!

Hope everyone is well and not melting too much in the heat! Xx

Argh! My phone changed drtcc to detached sorry! X

Thank you ladies. Unfortunately I haven't had any good experiences with my local epu. They actually made me feel so much worse with each of my miscarriages (it's just bad luck, I need to move on, never offered any extra scans or tests to ease anxiety). My GP is finally referring me for tests as I now qualify since I've had 3 miscarriages . I'm still waiting for the letter with my appointment date and who knows how far off that will be. I'm 37 so time really isn't on my side.

On a more positive note I contacted my insurance company and they will pay for investigative tests so I now have an appointment at St Mary's in 2 weeks time and I have my appointment with Dr S on 25 Aug. I'm hoping I should have my blood results from St Mary's by then so I can take them with me when I see Dr S and that should hopefully reduce the cost by a bit. Has anyone been to St Mary's? I'm seeing Dr Joash.

Wow, £5,000 Snoopy ? I do know what you mean about feeling let down by the NHS. I feel exactly the same.

more tests

I don't know where that last line came from ;)

I'm 27 weeks Drttc 
Ive found I've told loads of people about my history because I find it so condescending that they assume I was a one hit wonder... I always just say it's take us a little while to get here and if they ask I give more away. But I have always felt able and like I want to be open. I know it's not as easy for everybody.

How did you find NCT Drttc? We start at the end of August.

Our total costs probably wracked up to near to £5 too pj, so it's great that your insurance company are willing to pay for some tests.

Such a shame there is no continuity within the NHS. I was SO lucky with ours. To the point where the nurse gave me a massive hug at our last scan there and asked us to come back with bubs when she is born.

Hope your veins behave tomorrow Karry!

Good luck Karry!

We paid loadssss by the end of things as well! Particularly with all the extra intralipids I needed we spent over £7k... But that's including all prenatals/supplements, ovulation kits, and things like acupuncture too.

Seeking- we loved our NCT course! Our teacher was amazing and we've left feeling so knowledgeable. I can't vouch for the courses countrywide but this one was a 10/10. Have you thought about how you're approaching the birth? I've done a complete reversal and now want an all natural water birth haha

I've heard good things - just hope I get a good bunch of people.bim looking forward to it. Think DH is going to get a shock - he's clueless.
I'm going with a 'no plan' plan. Ideally I'd like natural with as few drugs as poss but I'm not going to be a martyr for it - if it's hurts beyond what I can manage I'll take ALL the drugs. Would love to have a water birth but being 'high risk' I won't be able to use the midwife led unit at my local hospital my only real concern is baby making her appearance safely so if it all goes out the window for that then so be it.

Hi everyone! Wow- it wasn't so easy to find you this time- and real mixed feelings scanning through. Amazing to see some familiar names progressing sooo well! congratulations !! And some birthd I've even missed.. My wee pred baby is only 7months and look how much good can happen in that time!
I'm sad though to see new names, though of course so happy you found this thread.. It was such a lifeline for me for 8 months prior to conceiving after my recurrent miscarriages, and for my whole, anxious pregnancy. I wonder how Trying, Hula and Sunny are though.. Can't see at first glance any updates. So I'm the big 40 now and wondering if I should could just be thankful.. My baby is more than enough and I know how bl00dy lucky we are. I don't know I could through that journey again with all the ifs, physical, emotional and financial challenges, especially with more travel from Scotland for intrallipids ... Hmm. I can't say never though and will need to decide soon. Louise said after pregnancy most immune get worse. Maybe too much staked against and I should focus on what I have .. Thoughts? But then the 'will I always wonder what if' is playing on my mind as it did when I decided to throw everything at it with the Mr S treatment.
Sorry for a big one, but it had been a while. Sooo delighted again for Seeking, Drttc and all the happy stories. It's just great to know there's more such deserving mothers to be out there and inspiration and hope for the rest xxx

So nice to hear from you Rosa, I can't believe your little one is 7 months old already!! 
I asked DrS about what the general consensus is with trying for number 2 - he said immunes can go either way so best to be re-tested .... Good by another £1k ish!!
We've decided that if/when we make a decision we'll just move up the scale to the complex plan which DrS said would be fine. So 2 extra IL's at £250 ish each. I'm also going to push my GP to prescribe more next time.
But I know what you mean - a friend asked me if we'd try for a second (give me a minute to have this one first!) and at the moment I just don't know. It was so hard just getting to this point, I'm not sure I could put myself and DH through it again. But equally I've always wanted 2 ... Or 3!!